Something Really Silly . . .

. . . and then I'll go deadhead roses.

I was being a little negative in my last post about the chemo baldness covering catalog the Cancer Center gave me on Thursday. But I have to admit that the models all looked very nice in their hats and turbans and scarves. And I don't think it's just because they're all young and high-cheekboned and wrinkle-free.

I have some scarves in my wardrobe, and I was online last night looking up tying techniques. I found some really cute ones here. But I found one site, which I will not link to out of consideration for the cancer-patient model, where the look was depressing and just plain awful, no matter how many twists and tails she gave it.

Was it because she was older and chubbier and jowlier than the girls in the paper catalog? Was I looking at her and thinking, "Oy vey, is that the best I'm going to look in a scarf? Yuck!"

But then I discovered what was wrong. The model in question had a low forehead to start with. And then she had tied every last one of her scarf styles tight, tight, tight to her head, just a little below her (former) hairline. No matter what style she sported, she looked as if somebody had sliced off the top of her head à la Thomas à Becket and the scarf was just bandaging the gory wound.

Give the paper catalog company credit. All their hats and turbans are built up in the crown, all their pre-tied scarves are worn down just above the eyebrows, and they all look stylish and cute. What's more, they sell a little quilted cotton cap and a padded scarf liner you can wear under your scarves and kerchiefs to add height and volume. Good thinking!

I'll keep this in mind. High and tight-- tacky. Low and loose, lovely.

Now I really go gotta deadhead roses!

Some Nice Straightforward Dithering

Yesterday I had my introductory appointment with my chemo doctor, Dr. L. My friend Frieda*, who'd been to the same practice when she was being treated for breast cancer, went with me and took notes.

There weren't really any major surprises about this part of the deal. I'll be getting my chemo through an IV, not through a port as I'd thought (thanks to the UPMC radio ads/public service announcements that've been running lately)-- my Stage 1 cancer doesn't warrant the big-gun doses that come with a port. Half hour of Carboplatin each time, then three hours of Taxol. I could have sworn the doctor said it was the other way around, but that's what Frieda's notes say and that's why I had her there taking them.

I'll have pills against nausea and Benadryl against some of the chemo side effects. Yep, this will all make me drowsy/spacy, and yep, not a good idea to try to drive myself home afterwards.

They'll check my blood cells and CA-125 levels each time. If the cells counts remain sufficient, the every-three-week schedule will continue; otherwise, I'll have to hold off a bit till they come back up.

I asked about supplements. A regular multi-vitamin might be okay, Dr. L said, but dosing up on one nutrient or another won't do me any good and may do actual harm. Better to do my best to maintain a healthy, balanced diet.

What about hydrocortisone creams? I'd read somewhere you can't apply steroids like that during chemo, but what am I supposed to do, mosquito season is here! No, he said, there's no problem with that, I can use them all I need to.

But speaking of skin care . . . I'd hoped my Sun Protection Factor 15 face cream would do, smeared on the top of my soon-to-be-bald (sob!) head. Nope, he said. SPF 50, at least. Wear it all the time outside, whether I have a hat on or not. "I'll get you some," said Frieda, who's recently started a job at a drugstore. "We have it on sale."

As to post-chemo-session side effects, they may not kick in till two days after. If five days afterward I'm still losing my lunch (or throwing up my immortal soul, as Mark Twain once memorably put it), that's the time to call the Cancer Center or the ER.

As I said, this was pretty much all fine-tuning and logistics. I didn't exactly thrill to the thought when Dr. L tole me what his mentor in med school, who is "an ovarian cancer guru" would have said about the fluid-filled capsule that ruptured in me. Dr. O, he said, would have classified my cancer as a Stage 2 because the sac was stuck to the abdominal lining, the peritoneum. "Hey! I don't need that!" I protested, doing the anti-vampire finger cross at him. "1C is bad enough!"

"No, I'm not saying you're Stage 2. Just emphasizing that you've absolutely made the right decision to go for chemo."

Oh, all right. Besides, no cancer was found in the solid areas of that capsule. Or in the scrapings of the peritoneum (taken from where it was stuck to, I should think???)-- they came up negative, as well. So there.

I mentioned that I'd learned online that my particular form of tumor is very rare as ovarian masses go, and that in 95% of those cases (or some number like that), it's benign. Just my luck to come out on the other side of the odds!

Yes, that's true, but at my stage and grade it will respond well to the chemo-- if there's any cells that escaped at all. Nice to hear, since I'd been on a cancer support chatroom where a couple of patients had said they'd been told that this mucinous kind is resistant to chemotherapy. Bugger that. If-- if!-- there's anything there, we gonna kill it dead.

We scheduled the first treatment for June 14th, after my birthday on the 12th and after school's out on the 9th. I'm doing mine on Mondays, so I'll (God willing!) be recovered enough to preach on any given Sunday this summer. The 7th was the date Dr. L suggested at first, but with my case, he said, another week wouldn't matter.

After I got dressed, it was off to the blood lab to give a sample so my base count could be determined (Frieda didn't have the nerve to stay in the room and watch-- shades of her own treatment), then to the scheduling desk, then to an interview with the financial aid counselor, concerning which I shall maintain a discrete silence.

Still all pretty darn straightforward. The dithering part begins with the brochures and pamphlets and certificates the scheduling nurse gave me about wigs and turbans and other headcoverings.

My hair should start falling out two to three weeks after the first treatment. I'm going to have to have some covering options, because this kid is not going "bold and bald." The world is not ready for the horror, nor am I. And laugh if you like, but I have gut-level religious objections against going around shaven and shorn, even chemically. But last night I'm looking at the wig catalog they gave me, and I'm thinking, these are inexpensive, that's good, a lot of them are cute on these young, high-cheekboned models, but I'm not madly in love with any of these styles for me, and none of the available hair colors really match mine, and do I really want to get something like this mail-order? And don't ask me why, but the fact that this company has given all their wigs girls' names really gets on my nerves. "Oh, golly, the best-looking wig is named 'Esmerelda' and a girl named Esmerelda was my worst enemy in grade school and now I gotta go round with her on the top of my head??!!!"

What I want to do is go to a local shop and have somebody advise me. Actually, the cancer center did give me a reimbursement certificate worth $200 that's good at a couple of area wigmakers. But there's still the question of real vs. synthetic and maybe real is way out of my price range and they say that it's harder to care for anyway, but what if synthetic is plastic and fake-looking and-- and-- and--!!!

OK, kid. Calme-toi, m'amie. Frieda has offered to bring me her wigs to show me what they're like, and I'll take her up on that. And I have the number of the nearest wig shop where I can redeem this certificate, and I can call tomorrow and make an appointment.

It. will. all. be. fine!

It may sound weird, but it's important for me to have this hair/head covering thing worked out before I start chemo. People are sympathetic enough already without me running around looking like "that poor cancer patient." And while I can forget and ignore the hysterectomy scar that's healing very nicely on my belly, every mirror will remind me that something in my body turned zombie traitor on me. I prefer to spend as little time as possible the next few months with my hopefully ex-cancer getting in my face.

Easing Back into It

Sang last night in our first choir concert of the Spring season. It went well. Some friends brought me a stool I could perch myself on. And when, during the first number, I discovered that holding up my black folder was too much of a strain on my sore abs, I lay my music down on another stool that'd conveniently been left in front of me.

I should have the music memorized by now, anyway.

It's a little frustrating to be able to do stuff like this and still not be allowed to drive or mow the lawn or even take out the used cat litter out to the trash can in the alley, but I guess that's how it goes.

And Sunday, when we have our big concert, I think I'll bring a lightweight folding music stand. Can't depend on that other stool being there.

Alarmed

Today I was looking at the copy of the pathology report I got at my surgeon's on Monday. I wanted to find out just what sort of ovarian cancer I'm dealing with so I could accurately put in the information on a cancer support website.

FINAL DIAGNOSIS

PART 1: ADNEXA, LEFT, SALPINGO-OOPHORECTOMY: MUCINOUS CYSTADENOCARCINOMA OF THE OVARY, WELL-DIFFERENTIATED . . .

Wait a minute. Left? left??

What the-- ? I could have sworn the problem was with the right ovary!

I read the report on the right one, and it said, "ADNEXA, RIGHT . . . ENDOMETRIOTIC CYST WITH CALCIFICATION IN THE OVARY." But that wasn't the 6 cm ovary with the Stage 1A tumor.

This shook me up! Ever since February 19th I was sure everyone had said the tumor was on the right!

I called my surgeon's office and talked to the nurse. "Yes," she reported, "the mass was always on the left. It's out now. Does it matter?"

Yeah, it matters. If I heard that wrong, what else have I missed?

It may be my intellectual pride talking, but this error of mine bugs me more than anything.

Do You Want to Go for a Ride?

I am two years and six weeks old. I am lying on a strange, high bed set outside a door in a long, gray corridor full of doors. Suddenly, a dark-haired young man in a white coat looms over me. His face is marked by disapproval, and a little alarm. His expression voicelessly rebukes me: "Why aren't you asleep?" (I know this grownup look.) He recovers himself, applies a smirk, and says to me, "Little girl, do you want to go for a ride?"

"Do I have any choice?" I think to myself.

I don't. I'm about to be taken to surgery to remove a benign cyst that has closed my left eye. I am not aware of this, or I had forgotten it, but I yield where I cannot rebel. More young men in white coats come, the high bed turns out to have wheels, and off I go.


Yesterday afternoon I had my first follow-up appointment with Dr. C, my gynecologic oncologist. Though nobody told me this ahead of time, I figured the agenda would cover checking up on how I'm doing post-op and discussing my further treatment.

I've been remarkably free of what is called "cancerhead"-- uncontrolled and fearful obsessing over one's cancer and its implications. But going into this appointment, I had three things I hoped would happen or that I would not have to face.

First, that I could ask my surgeon how my ovarian tumor came to rupture without coming across as judgemental or as casting aspersions on his competence.

Second, that he would not, in anywise, suggest or recommend radiation therapy. It's one thing if you're fighting breast cancer, but there's too much essential equipment in the abdomen that can get permanently fried. And according to accounts I've read online written by women who have gotten radiation for ovarian cancer, at some point in the process they administer the treatment by way of rods put up your . . . well, you know. O noes!! Du nawt want!!!

And third, that it would all be straightforward and conventional and I wouldn't have to make any hard choices. Did I want to go for a ride? I don't know, you're the prominent gynecologic oncologist, you tell me!


It worked out well that Ellen*, the friend who drove me to the doctor's office, is a Registered Nurse-- not in oncology, true, but knowledgeable and able to take notes while I asked questions. Did I want her in the exam room with me? You better believe I did.

So there we are, waiting, and in comes Dr. C wearing a bolo tie. Don't mess with Texas? He grins and says, "Boy, you just have to cause trouble!"

"Yeah, gotta be original!" I quipped back.

How original I am, he was about to tell me, right after my exam. Seems that when they got me open, they found that the tumorous ovary was lying on top of a sac of clear yellow serous fluid-- "It looked like pee, if you want to know." The ovary was adhered to it and it was adhered to the tissue below/anterior to it-- "Like endometriosis-- I had a terrible time getting it all off." It was this sac of liquid that ruptured; the problem ovary itself came away whole. And the quandary is, was that sac part of the tumor or something entirely separate stuck to it? The serum in it looked nothing like what was in the ovary (which Dr. C said "Was full of brown sludge.") And when the lab tested some of the serous fluid, it came up clear of cancer cells.

So that took care of concern No. 1. I'd figured adhesions came into it . . . Could that have been the septation Dr. P my gynecologist had shown me on the sonogram in February? "Oh, that ovary was full of septations. Like a bunch of grapes inside." But attached like a bubble head out the end of it? No, Dr. C didn't see anything like that. "Could what we saw have been this sac behind the ovary and on the sonogram it looked like it was in the same plane?" "Very possibly."

Which led us to the question of what to do about it all. "You've got a choice," my surgeon said, "And there's no right answer." **

Oh, no!!! You're just supposed to tell me what to dooooo!!!!! . . . Take me and my gurney and just wheel me down the hall!!

"Here's your choices. We can assume that the fluid under the ovary had nothing to do with it and the cancer was restricted to the ovary. The lab had to take several sections before they found the cancer in it. That would put you at Stage 1A. The tumor was Grade 1, very well differentiated, and that's the least aggressive kind. Chemotherapy would make no difference in your prognosis, the surgery took care of it all. We'd just monitor you every three months with a CT scan, an office exam, and a CA-125 test. And you'd watch to see how you felt and if you had any symptoms. Then we'd go to six months if there was no sign of recurrence, until you were five years out.

"Or . . . we can assume that the sac we found was part of the tumor, and since it ruptured, that puts you at 1C. A third of the time a test of fluids can come up showing no cancer cells but cancer is present. You can do chemotherapy to make sure there's no cancer in you, and again, we'd do the tests and watch and see."

He paused. "So what do you want to do?"

Oh, phooey. So this time I have a choice whether I want it or not.

Dr. C said that even at Stage 1C, the recurrence rate is really low, only 10% - 15%. "The probability is that you are cured."

He went on to say, "Now, chemo is poison. It's there to kill the cancer cells. It will kill healthy cells as well. But if you do chemo, things go back to normal. But with radiation, the damage is done and can't be undone. And there's a lot in your abdomen that can be damaged." In other words, radiation is not indicated for me-- yay!!!!

"It's up to you whether you want to do chemo or just watch and see."

I felt myself poised at the brink. I flirted with the idea that I could take my chances and not have to undergo the expense and rigors of chemotherapy after all. A reprieve?

But what if I was wrong?

I asked more questions and Ellen did, too. Dr. C said, "Have you ever heard of the term 'analysis of errors'?"

Ellen had; I had not. "No . . . is that like Worst-Case Scenario?"

"Not exactly. It's considering what could happen if you make the wrong decision. If you do chemo and there was no cancer there anyway, you've gone through all the stress of chemo for nothing. But you'll never know that."

"Like, 'See how great my elephant repellant works-- we never have elephants around here at all!'"

"Exactly. And if you don't do chemo and the cancer does come back . . . We couldn't talk about a cure anymore. The cure rate for recurrance is only 3 to 5%. "

Oh! I'd say that was a piece of information I needed . . .

"I'd be in remission only?"

"Yes, and remission for ovarian cancer would probably get you only two and a half more years. We can't just go in and take a tumor out. When ovarian cancer remanifests itself, it's all over the abdomen. Have you ever seen algae on a pond?"

"Yes."

"It looks like pond scum. It covers everything. We can do our best, but we can't get it all." And if I understood him right, at that stage you can't use the first line platinum-based chemo drugs, because the cancer will have developed a resistance. Or was he conflating this with what happens if one does chemo and it comes back anyway?

He explained that the metastasized cancer covers the organs and keeps them from reasbsorbing the four to five liters of fluid that wash through everyone's bellies every day. Which is why women with advanced ovarian cancer bloat up. "It's called ascites."

"Was that sac of fluid you found in me ascites?"

"No, no sign of ascites in you."

We asked more questions. He said they've developed good anti-nausea drugs that you get before chemo. "They make you drowsy, so most women just sleep through the therapy. Afterwards-- it depends on each person, you'll probably feel like you're getting over the flu for the next couple of days."

Ellen said, "I've had patients who've asked me, 'Is there alternative medicine for this?'"

"If there was, we'd give it," Dr. C answered her. "The alternative is, you can die."

More questions, more answers, more going over and clarifying what had been said before. Talked about statistics: Every year (in America?), about 20,000 women get ovarian cancer and in the same year 16,000 or so will succumb to it. And about odds and percentages. One can play them when dealing with large groups, but when it comes down to oneself, the odds are either 0 or 100%.

If it were to come back, my kind of ovarian cancer would recur somewhere in the abdomen. It isn't metastasized through the bloodstream, so it wouldn't go to the brain or bones or wherever.

Some comfort, when you consider all the damage it would do in one's midsection! Though maybe it's good to limit the twinges one could get cancerhead about.

For me, though, the fact that my cancer was caught at Stage 1 weighs heavily towards total cure, whichever way I would decide. Unlike for 80% of ovarian cancer patients, who aren't detected until they're Stage 3 or 4.

Finally, Dr. C looked me in the eye and said, "All right, do you want to do chemotherapy?"

I looked back at him and said slowly (and I thought, meaningfully), "I don't want to do chemo . . . "

"All right," he said briskly. "That's your decision."

"No, listen--"

"No 'buts'!"

"No, listen! Do I want to do chemotherapy? No, I do not. Do I think it might be wise to do chemo? Yes. Do I think the consequences of not doing it now and wishing later I had are too great? Yes, I do. So yeah, even though I don't want to, yeah, I'm going to do it."

Sheesh! Enough with the drama already! I didn't want to get ovarian cancer, either, but I've got it-- or at least, I need to make damn sure I've no longer got it-- so I have to deal with it, whether I want to or not.

Dr. C told me what it would be, and it was very familiar from my on-line reading. Six courses of Carboplatin/Taxol, one every three weeks. Happily, there's a UPMC chemo center a mile and a half from me, so I won't have to get a ride downtown. "The chemo's the same everywhere in the hospital system, no matter where you get it." He'd have his nurse look up the number and get in touch with the chemo doctors to set up an initial appointment.

I asked, oh yes, what about leukemia as a side effect? Ah. That's a danger for very young women, in their teens and early twenties, whose blood cells are still developing. (Or something of the sort.) "You're still young," he allowed, "but I think you're a little past that!"

Yeah, I'm not a little girl anymore. And this time, when the medical guy asked did I want to go for a ride, I did have a choice in the matter. Later this summer when my hair has fallen out and I'm feeling groggy and grotty and my mouth tastes like old aluminum, I may temporarily regret my decision. But given the fact that I've got my support system and my financial aid in place and my momentum's going, and given the consequences of being wrong, I think I've made the right one.

___________________________________
**Some dialogue word-for-word; other parts reconstructed or conflated.

For What It's Worth

I'm starting to question the value of spending too much time reading websites and watching YouTube vids on ovarian cancer and ovarian cancer survivors/fighters.

Maybe later-- assuming I have to do chemo-- they'll be a comfort and a support to me. But right now, ya know, it really isn't useful for me to be glued, say, to the video made by one woman with Stage 1C who celebrated her five-year "cancer-free" anniversary and two weeks later found out her belly was riddled with tumors (how the hell did they miss that, I wonder?). Or to be reflecting on the implications of how "They're not talking about a cure any more; I'm now just 'in remission.'" Or gawking at another vid a 3C sufferer posted last summer noting that she's now been through six, count 'em, six major surgeries, and consequently wondering what it Means that she hasn't responded to any comments since then . . .

It's not that I'm unwilling to face potential reality. It's more that I'm taking to heart what my Lord Christ meant when He said, "Who by worrying can add a single hour to his life? . . . Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

So right now, my job is to recover fully from last week's surgery. So far, so good, and I've really glad I asked my surgeon about the self-absorbing sutures before I went into the OR. My incision is healing into something I can be going on with for a lot of years to come. I'm not saying I would have been depressed by the sight of staples; I'm pretty good at detaching about these things. But from the pictures they just look more . . . makeshift, somehow.

Then as I recover, in a little over a week, on the 10th, I have my strategy appointment with my surgeon. Yeah, I hope I find out how on earth the stupid tumor came to rupture. But beyond that, I hope to be finding out what my treatment options and strategies might be.

After that, we'll see when the time comes. There is absolutely no point in my getting bent out of shape stressing over things before I truly have to take them on.

Besides, what's the worst thing about losing time to suffering and to undergoing an early death? Besides the suffering itself-- Lord forbid I should minimize that! -- I mean. Is it not the diminished chance to experience and enjoy life? So why and how should I fail to experience and enjoy life while I've got it, especially now when I'm actually feeling rather well (all hail, Vicodin!)?

The other thing is, why should I waste my time fretting over possible death from cancer, when I will have to die of something or other eventually anyway? Why should I let Death petrify me if it should approach wearing that particular mask, as opposed to any other? Is Jesus Christ not my Savior? Has He not borne my sins and my death in His body on the cross? Did He not rise again to give me life eternal? For me, to live is Christ and to die is gain!

But I am convinced that I shall remain in this land of the living for quite awhile longer. There may come a time when reading about survival rates and possible complications and recurrances and so forth will be edifying. But right now, I intend to enjoy the life I have. And if that means watching episodes of Gordon Ramsey's Kitchen Nightmares on Hulu.com, so be it.